Catching up

Yes, it's been 4 months since I have posted a darned thing here. I'd like to say that I won't let it go that long again, but who am I kidding...it will probably happen! So, I'll try to briefly catch up for the moment.

I last posted right after Alec started school. He's now almost done with the first half of kindergarten! I really had NO idea how busy things could be just in the first year of school. He has had projects or homework most every week, and not that it takes all that much time but it does seem to add to the usual busy days around here. He has been doing very well in school and truly seems to enjoy it. The first few weeks were tough I think - he really didn't talk to too many of the other kids - but that did not take long to change. And it is really amazing to see not only the development of his reading and writing skills, but his understanding of prayer, God, and friendship. We have had our struggles at home but the good news is none of that seems to show up at school. Given the choice of tantrums at school or at home, I'll take home every time! He had a great time at Christmas, and pronounced very spiritedly "this is the best Christmas EVER!!!" It was nice to see him so happy.

Cece's been doing well this fall. She's had a couple of bugs, including a bout with mycoplasma pneumonia and a nasty cold. But she managed to get through both of them without hospitalization, thankfully. We also have suspected that she's had some minor sickle pain on a couple of occasions as well, but nothing that didn't go away quickly. We can only pray that trend continues for her. She is growing like crazy and is quickly moving out of all of her 3T clothes! She's also starting to learn her letters and numbers really well. A few days ago I witnessed her doing a real drawing of a person for the very first time - i.e., something other than just scribbly lines - and it was so neat to see! We still have not overcome her sleep problems but perhaps that will come with time, and that is very minor in the whole scheme of things. Her imagination has become so incredible lately. In fact her favorite Christmas gifts were the $1 a piece dinosaurs that I picked up for her stocking. Little did I suspect that would be the winner of all the many packages!!!

We've had a couple of opportunities to promote the Ronald McDonald House recently, and that's been a lot of fun. Last week we were interviewed on the local news and the kids thought it was SOOOO cool! None of us had ever been in a TV studio previously so it was a great adventure for the whole family. We were mildly concerned when we found out we would be sitting 20 feet from the news desk while they did the newscast...silence is not our family's greatest virtue, you know?!?! But the kids did really well and were quiet until the end. They were watching themselves on the monitor while we were on camera, and every time Cece would go out of view she would say to Fred, "Where my Cece???" The newscasters were so nice and even let us take pictures of them with the kids! If you are interested in the news piece, you can find it here. Cece is also the feature story on the House's website as of this posting - not sure how long that will last, but for the moment you can find that here.

A few snapshots from Christmas...

Milk and cookies for Santa!

Digging their new chairs...

and tearing into their gifts!

Fun with the new toys

These are MY favorite gifts.

Wishing you blessings during this Christmas season and for the New Year!

School's in!

So, I'm breaking out of the hospital posts and on to just your average, every day, family craziness!

It has been a very busy couple of weeks. Alec started Kindergarten just over a week ago! He's done pretty well with the transition, but I will fully admit that we are all tired and a little thrown off by the new schedule and all. Fred and I have split our work schedule so that I am going in earlier, while he takes Cece to day care and then drops Alec off at school. Then I leave work early to pick Alec up and then Cece. By the time we get home, the kids are excited to see each other but picking on each other at some point during the two block drive home. Apparently three minutes in the car is much too long to spend without playing "I'm not touching you!" And Alec has done a fantastic job of paying attention and following directions at school, so once arriving home the unrest unleashes onto his unsuspecting mother. And sister. And perhaps the cat.

Anyway, we have now made it through the first full week of full days of school, and we are still standing!

Ok, some of us are sitting...and two are sleeping. You know what I mean.

Today it was finally NOT RAINING when we got home, and the kids decided to run up and down the driveway. Amazingly the significant expenditure of energy made a huge difference in our evening, and there were NO time outs tonight!!! In fact, Alec fell asleep in my arms on the couch. That is a true sign of exhaustion...

Cece is doing very well. She had a post-hospital recheck a week ago and everything looks good. We still have no idea what caused her nasty but short-lived fever...but whatever it was, it appears to be gone! Here's hoping for more than 8 weeks before the next hospital run. But regardless, we're just enjoying each healthy day with which we are blessed!

First day of school!

Cece was sad...Alec tried to make her feel better.

Ready to head to class...

And this is when Mommy started to get a little weepy...

We are so proud of him!

Home!

We are home!

And exhausted.

Well, two of us are...the other two don't want anything to do with bedtime.

Thanks for thinking of us and for all of your prayers! We are very grateful. I have a few cute photos of Cece after receiving her "going home" notice today...will try to post them later this week! For now, I am going to go find my pillow and crash for a few hours.

Good night!

One more night...just one more night

No, I'm not channeling Phil Collins.

We're hoping this is just one more night, and that tomorrow we will receive our get-out-of-hospital free card!

Ok, not FREE. But whatever.

Since the source of Cece's fever has not been identified we will need to wait until tomorrow to ensure that her blood cultures are negative. Her pediatrician stopped in this evening and said that she fully expects negative results. Time will tell, but I will say that she is definitely acting like herself...including still being awake at 11 pm. After no nap.

Yes, that's our girl!

Tonight she took a bath, danced between the bed and the cot, ate cereal, drank milk, and watched both Madagascar 1 and 2. I am hoping that sleep will approach soon. I know it will for me!

Thanks for checking on us.

Back in the saddle...

It's been a busy summer. And it really was never my intention to make this into a "I'm only posting when we're in the hospital" blog. But for the moment, I guess that is what it has become!

So yes, Cece is back in the hospital. We came in through the ER at about 6:30 last night, and about 6 hours later we finally made it up to our room in Peds. Not sure why it has become such a long wait to get from there to here but it was 6 hours when we were here 2 months ago as well! In any case, her temp was 102.8 so we followed the usual routine...pack up...call the hematologist...drive to the hospital. Only this time, she started crying as soon as we walked in the door because the memory was a bit too fresh. I guess that's just going to be the way things are as she gets older and remembers things more clearly.

Her temp was up to 104.5, with Tylenol, at 1 am this morning. But for now she's at 100.1, playing with her new felt farm toy, and watching Winnie the Pooh. So all is good for the moment! They've done every test under the sun and everything has come back negative. So she'll stay on her IV for at least another day and then we will wait and see what the doctors recommend. With any luck she will get to sleep in her own bed on Wednesday or Thursday night.

Thanks for your thoughts and prayers!

Yeah, we're still here...

So, I seem to be a bit tardy in posts these days. It's a bit funny, really, because there hasn't been much going on...so I really have no excuse. Well, perhaps the fact that the children don't want to go to bed until the sun goes down has something to do with it! By 9:30 at night my brain isn't working all that well anymore, and so I haven't been keeping up with our blog.

But yes, we're still here.

We had a good vacation at the end of June/beginning of July. We headed to the suburbs for a couple of days and had a fun time taking the train downtown Chicago. The kids played in the fountain at Millenium Park and we got plenty of walking in between the tall buildings and along the Chicago River. We then headed to Door County, Wisconsin and enjoyed a few nice summer days there. The kids had a fantastic time at the fireworks on July 4 and we were treated to a ride along the bay in a big ferry boat! It pays to have friends who know people who own ferry boats!!!

Alec will be starting kindergarten in about 5 weeks. Oh...my....gosh. How can my baby already be going to kindergarten??? It seems like just yesterday that we brought our little man home...

Ahh, memories...

We have his supply list, and I've ordered his uniforms, and yesterday we purchased fabric and supplies to make a Transformers nap mat! Sure, I could have bought one, but it seemed too easy. Ha!!! Actually I think it will be a lot of fun and he will enjoy helping me put it together. You've got to love free patterns on the Internet!

Cece's doing great. She has scraped her knees and fingers up numerous times over the past few weeks and we have been concerned that she might end up with infected owies, no matter how careful we are with cleaning and slathering with Neosporin...but I tell you, that girl is an amazing healer. Perhaps the knees look a little worse for the wear but her skin is as good as new. We had her appointment with the pediatric orthopedic doctor last Friday to check out her flat feet. It's all good news...no orthotics, no special shoes, no braces, no worries!!! She will see the cardiologist in a month or so and hopefully after that appointment, we will be able to check that specialist off of the list as well. One of Cece's favorite new phrases is, "Mommy, look at my happy face!" And with good reason, it seems!!!

I'm having a lot of trouble uploading pictures, so here are a few from our Chicago trip...I hope to post a few more later this week.

Thanks for checking in on us!

Home sweeeeeeet home

Cece was sprung from the joint released from the hospital at about 1:00 this afternoon. She had an utter and complete meltdown upon removal of her IV, and then did not want to be put down at all while I attempted to pack up 3 days worth of our collective stuff. But she was at least willing to stand on the bed and just look at me with teary eyes for a few seconds so I could wrap it all up! We arrived at home and promptly went to bed...both of us got a nice nap.

Of course, now she has no interest in going to sleep. Oh well.

It is GOOD to be home. Thanks again for your thoughts and prayers!

Quick update

Well, there's not too much to report here. We finally have wet diapers - that's a good sign. She was probably a bit dehydrated when we arrived, which is not a good thing for a sickler. And right now she is playing with a balloon and watching Cars for the 37th time today.

Well, maybe it only SEEMS like the 37th time.

Anyway, the doctor visited around noon and said that Cece may get to go home tomorrow. We'll just wait and see how she does, but tomorrow would be at least one day earlier than we had expected!

Thanks for all of your thoughts and prayers...it looks like this will be a nice short stay!

14 months

We had the kids' birthday party on Saturday, and I received some oh-so-gentle ribbing from family members with regard to my very limited blog updates. So I planned to put a little post up with some pictures of the party and all of that good stuff.

Unfortunately, you'll have to wait for that one...because I don't have the pictures downloaded yet and the camera isn't with me at the hospital.

Yep, the hospital.

We made it 14 months, which is pretty amazing for a little one with sickle cell disease. Cece has had a runny nose and a bit of a cough for a few days and we thought it was just allergies...and then Sunday she had a low grade fever...and I took her to the doctor yesterday morning and it looked like a simple virus. Then the fever spiked and all of that changed.

At 6:30 last night I brought Cece to the Emergency Room to be evaluated and admitted. Now why they would call that place the EMERGENCY Room I truly don't know. We have had some long stays down there but this was the longest by far. At about 11 we were coming up to our old haunting grounds, Room 203. At midnight we were checked in but Cece was a bit wound up and not at all ready to sleep. So we watched Elmo and then about half of Cars before falling asleep, snuggled together in the hospital bed.

She had a very rough evening of being poked, prodded, xrayed and IV'd. And even though we know exactly what to expect and exactly what it will take every time we show up here, it doesn't make it any easier for anyone. It is heartbreaking to hear your baby girl screaming while you have to hold her down for procedures. But it is what has to be done...so we just pray a lot and do whatever we can to comfort her.

Fred went home about 11:30 and had to be up at 5 to go to work this morning. It will be a long day for everyone, but for now the princess is sleeping peacefully. That is a blessing.

We'll probably be here until Thursday morning, assuming the hematologist wants to wait for her blood cultures. Her fever was still over 101 this morning which guarantees another full day at the absolute minimum. I promise to update when there's any news to share, but the usual routine is just waiting it out.

None the less, we made it 14 months. And for that we are grateful!

What we've been up to...

I am floored that it is already May. The last month has simply flown by! A few things that happened in April...

We officially made it A FULL YEAR without hospitalization for Cece. (I'm not counting her surgery hospitalization, since that was planned and not due to illness!) Of course, when I mentioned that at her well-child visit this past week, our pediatrician told me to shush as to not jinx it! Yes, it will happen again...it is unavoidable. But PRAISE GOD for the months that we have had. We are so grateful.

Alec had his pre-kindergarten physical. Oh my gosh, my baby is going to kindergarten! He had to have two shots, a blood test, and the old "pee in the cup" business. Poor guy...but he made it through with just a few tears. He is measuring at the 95th percentile for height and weight. I always tell people that when he is 8 or 9 I am going to have to stand on a stool to reprimand him! When we were done we gave him a special treat and let him play in Play Land at McDonald's. I am usually not a fan of the petri dish play area but since he had three pokes, I just doubled up on the wipes and anti-bac spray. Needless to say they had a rollicking good time.

Cece had her well-child visit at the same time and is at the 50th percentile for height and weight! WOO HOO! For the longest time she wasn't even on the chart (i.e. below 3rd percentile) for weight, so it is fantastic to see how far she has come. Everything else was good, except that the doctor was a bit concerned about her flat feet. Kind of funny considering how BENT they were when she was born and how hard we worked to straighten them out during the first couple years of her life! So we'll have to keep an eye on that but in the whole scheme of things, it is incredibly minor. Once again, we are blessed.

And oh yeah, I had a birthday. It had a zero on the end. I'll let you figure the other number out...but let's just say it's not a 3. I was not really ready to leave my last decade behind but hey, my life is pretty awesome so what do I have to complain about??? Fred took me out to dinner and a movie (we hadn't seen a movie in a real-life-theater in several years) and gifted me with some money to purchase some much-needed clothes. Yep, blessed again.

Last night we took the kids bowling with an outing for families at our office.

Alec "wacky" bowling. He actually got two strikes that way...I wasn't able to get one bowling normally, even with the bumpers!

Cece was bored with the bowling after the first couple of frames, so she decided to "play the drums" (her words, not mine) instead.




But based on this shot, I'd say she had a good time regardless.

Alec working on his alphabet on the fridge. Ok, U comes before V, but so what...he did this by himself and was oh so proud!

And now I present to you...

Cece's potato song.

Sweet.

Yep, still on the face of the earth

I am a baaaad blogger. It's been almost a month since I wrote a stinkin' thing.

But for now, I am sleepy. So hopefully tomorrow I can find a few minutes to post a couple pictures of the kids from the last few weeks! Really, it has been pretty quiet around here. Boring, even.

I like boring - it means no hospital visits :-)

See you tomorrow, maybe!

A good day

This morning the kids got ready without a fight.

When I got to work, no one had taped the drawers shut on my desk, or placed Vaseline on my phone earpiece, or put plastic wrap on my chair. (It is April Fools day after all, and I do work with some crazy people.)

I didn't have to go to any meetings today. Well, one phone meeting, but I can deal with that.

I was greeted by two smiling faces at our daycare providers home, and two big hugs.

We went for a walk around the neighborhood while the kids rode their trikes. It was windy but sunny and had the scent of Spring.

Dinner was awaiting us in the crockpot. We noshed on comfort food…beef and noodles with green beans.

Alec ate the food that I made for dinner. And he even said that he loved it. This from the pickiest kid on Earth.

Cece played with stickers.

And then she let me do her hair with only a little crying…even though we were fresh out of marshmallows.

Yes, it's been a good day.

Hi/Lo Thursday!

This post is part of "Hi/Lo Thursday" on the Riggs Family Blog. Check out their blog to read everyone else's "Hi/Lo" posts and get your link on their site.

Our "Hi" this week:
Cece's surgery went off without a hitch. She had some pain when waking from anesthesia but the nurse was right on it and a little morphine really did the trick. We only had to stay one night and best of all, she completely avoided having any symptoms of a sickle cell crisis, which is a big concern with any surgical procedure. Prayers were answered all around and we are so very blessed. Thanks for all of your thoughts and prayers!

Here's a picture from the hospital on Tuesday night during some of her limited "awake" time. She's watching the Curious George movie in her crib, holding her new bunny from the awesome people in Child Life, and nibbling on a shamrock cookie. Such a little sweetie!

And here's a snapshot from tonight - Alec and Cece on their "stage" in the kitchen. You'd never know that anything had happened this week at all! They've both done so great during this little adventure.

Our "Lo":

I felt very sad for the little boy next door to us in the hospital. The room walls were literally paper thin and I could hear every word that his mother said to him. He was pre-verbal, maybe 12 months old, and she yelled at him all night. After several hours of this, I could do nothing other than pray, so that's what I did. I hope that things turn around for this family and that this child has a chance to grow and thrive.

We enjoyed a quiet day at home today. Well, quiet is a relative term...the kids ran around like normal but everyone except Daddy managed to get a nap in this afternoon!!! It was lovely and relaxing. Hope you are all having a great week, and thanks again for your kind thoughs and prayers.

HOME!

Super quick post tonight, since I am just plain sleep deprived...

but we are HOME!

Cece's asleep (or near asleep) in her bed. She ran around and giggled and jumped and did all of the normal Cece stuff today. I can't thank all of you enough for your thoughts and prayers.

In Cece's words...I happy! :-) Hope you all have a great night.

Mostly good...

Cece made it through her surgery like a champ. She went to sleep very peacefully in the ER (I was allowed to go back with her) and woke up pretty upset in recovery, but a little morphine took care of that. We are not in the Children's Hospital as they ran out of room, so instead we are in the "satellite" which is the old ICU wing of the main hospital. It's ok, although I really wish there was a bathroom in this unit...so that will be interesting tonight. We do have the most fabulous nurse who is very experienced with sickle cell patients so that is definitely a plus. The problem at the moment is that her IV clotted and now they have to redo it...which is not good....she's a very hard stick. I'm praying it's not as bad as it has been in the past.

Thanks for all of your prayers and thoughts! They're truly appreciated!!!

Surgery schedule and a few pictures

We are leaving for Madison sometime this morning...well, who am I kidding, we're not packed yet so it will probably be this afternoon. I'm waiting for the call from the hospital to find out exactly what time Cece's surgery will be tomorrow morning and if I have a chance I'll post it here. I have had varying levels of anxiety about it throughout the week and have been praying for peace quite a bit. For the moment, peace is present, and being only 2 (well, almost 3) Cece is blissfully ignorant. I think it's best that way!


If you're not already following Abby's story, she is having surgery today. Please say a prayer for her and for the surgeons that will be performing her procedure. She still has no white blood cells so it is dangerous but unfortunately necessary. She's already been through so much more than any 4-year old should have to endure.


On a happier note, here's a few snapshots from the last couple of weeks!


Alec joined Cece during a catnap in our bed. So for all of those people who are always asking if they are really brother and sister...I think this covers it. It's not all about biology!


I'm bragging a little...but I was really proud of these cornrows! It's my 4th attempt over the last few months and the first one that really came out looking respectable. I redid them last night so that we will have no-maintenance hair during this week's hospital stay.



We had chocolate cake for Aunt Pat's birthday. Cece saw the cake on the counter and literally CRIED when I put it in the refrigerator and told her that she had to eat dinner first! So when cake time finally came, she dug in like the carb queen that she is and polished it off. When completely satiated with chocolate yumminess, she simply looked at me and said, "Mommy, I happy!"






How sweet is that?


UPDATE: Surgery is scheduled for 11:30. That's about 3 hours later than we had hoped for, as no food is allowed after midnight. All we can hope is that tomorrow is one of her "I don't want to eat" days as opposed to one of her "I'm going to eat everything I see" days. I just called RMC house to verify that we have a room and they are full...so I am supposed to call back after 2 to see if we have a room or not. If not, they'll get us a hotel room. We'll wait and see...

We participate in "Pray for Me... Pray for Others" on the Riggs Family Blog. Check out their blog to add your prayer request. Join a community of friends who care about you, and hope you will care about them.


There's so many people that I could ask for prayers for today. It seems that every day I hear of another person who is suffering with illness, struggling with financial problems, or having some other trial. So for today, I have only posted a few of those prayers on Riggs' blog...and there will be plenty to add for next week!

I haven't written the rest of the Madison visit story as of yet...and it's not going to get done tonight, either. Perhaps tomorrow! We did get the remainder of Cece's CBC results, and as the nurse put it, all were "excellent!" Reticulocyte, Hemoglobin and Hematocrit had all incresed slightly since her last draw in October. This would always be great news, but is particularly good to hear as we are at a point where her fetal hemoglobin is, most likely, no longer present in her system. Fetal Hemoglobin has protective qualities for people with sickle cell disease and remains in the blood stream for months to years after a child is born. So this has been a secret worry of mine as of late...what if she has been doing so well (in SCD terms) because of Fetal Hb? Of course there is no way to know, and only time will tell what her prognosis will be. For now, I'm just pleased as punch to hear the word "excellent" in relation to a blood test.

Please keep Abby in your prayers. She is having a rough go of it. Also, please pray for Cheri, who is battling multiple myeloma. She is the mother of one of my staff members and it has been a very long and difficult road for their family. May God bless all of them and comfort them.

Quick follow up to yesterday's quick note

I'll write more tomorrow, but for now I'll just let you know that it appears that Cece will not need a pre-op transfusion. So that is great news! The rest? Well, it was a comedy of errors.

More tomorrow. For right now, I'm going to go try to sleep for more than 4 hours as the eyelids are starting to get verrrry heavvvy. Good night, and thanks for your thoughts and prayers!

Just a quick note...

I've got to get to bed as the alarm is going to seem REALLY early when it goes off at 5...but just wanted to ask for your prayers for a couple of intentions.

Please pray for Abby. She is in the hospital again and it looks like it's going to be a rough week. Her little body has been beaten down so many times by all of the chemo, and she is suffering yet again. Please pray that she is not in pain and that the doctors can manage all of the many side effects that she is enduring, and also that her family can continue to have the strength they need to help her through this difficult time.

Please pray for Landon. I "met" Landon's mom on a Yahoo group for parents of kids with sickle cell disease. Landon was scheduled to have his spleen removed last week - a surgical procedure that is often needed in the most severe cases of sickle cell disease. He has been having a lot of problems and his prognosis is not good. I have not been able to get in touch with his mom, so I'm hoping and praying that all has gone well.

Lastly, would you please say a prayer for Cece? I feel almost selfish asking for this, but the reality is I'm starting to get kinda nervous about her upcoming ear tube and adenoid removal surgery. Surgery will be on March 17 and her pre-op appointment is tomorrow. I'll post any updates that we have after we get back from the appointment, but at this point I don't expect to know a whole lot more then than I do now. We'll find out sometime next week whether she will need a preoperative transfusion. I'm hoping not but time will tell.

Thank you!!! And in addition to that...how can I pray for you? Leave me a note. It's the least I can do. Blessings to you!

Rubber Duckie, you’re the one…

This post is part of "Laughter Lives! Tuesday" on the Riggs Family Blog. Check our their blog to read everyone else's "Laughter Lives!" posts.

I haven't had much time to blog lately – and I'm sure all 6 of my readers have been anxiously awaiting another post! HA! Anyway, it's been a busy few weeks but things are finally settling down. I think that "Laughter Lives Tuesday" is as good a time as any to get back in the blogging biz!!!

Lately Alec has been listening to a Bible Song CD when he goes to bed at night. And apparently he really is learning something from it, as he shared a prayer with his sister and me:

"Our Father, who are in Heaven…"

"HALLOWEEN be Thy name!"

He did not understand why I was giggling my socks off.

During the weekend Cece plopped down next to me, Oreo in hand, and chowed away. When the cookie had been mercilessly devoured, she looked at me with sad puppy dog eyes and exclaimed, "Mommy, where cookie go????" That's a new ploy to get more cookies! And it almost worked!

This morning as I took a shower Cece was playing in the bathroom sink. And the result?

Duck in a cup.

My girl loves her duckies!

Abby needs your prayers

Abby Riggs is 4 years old. She's in the fight of her life against a very agressive form of leukemia. This Wednesday, she will begin the most intense series of chemotherapy treatments...treatments that she may not survive.

Would you please say a prayer for Abby? Or if you're not a praying person, at least think of her? She needs every ounce of faith and hope that can be offered for her. Although I probably only have 5 people who ever read this blog, I am hoping that perhaps each of you can ask others that you know to pray for Abby as well.

Please click the link on the right side of the screen to read more about Abby and her family. Thank you!

All's quiet...

Or, at least it has been on my blog. So here's a quick post!!!

We had a good and uneventful Christmas. No one was sick (THANKS for your prayers!) and the kids had a great time opening gifts! We spent New Year's with some special friends and enjoyed watching all the kids parade around the house with various musical instruments for "Kids' New Year" which occurred at 8 pm :-) Cece apparently did not realize that was the end of the evening as she stayed up with us until about 11:15. What can I say, she's a party girl!

Things have been a little challenging over the last few days...I believe that my darling son is 4 1/2 going on 17. Its probably just over stimulation, peculiar schedules, and the spectacular nutritional experience that the holidays bring (cue sarcasm here). And lets just say that I would NOT have won any "Mother of the Year" (or even the week) for my ability to manage these situations.

But tomorrow is another day, so we'll both try to do better. Ok, at least I will try to do better!!! And no matter what, I love him more than I can say...which I make sure to tell him, especially after we've had yet another discussion about why he shouldn't smack his sister or use an entire roll of toilet paper or leave the water running or throw his toys or...

Oh yeah, I forgot. He's 4!!!!

Happy New Year!